Everything Happens All At Once!

A few weeks ago my Grandmother (in-law) was hospitalised. She’s been quite ill for a while and had a fall resulting in a lot of bumps and bruises and a potential fracture.

She’s been in hospital rehabilitating for over 3 weeks now and it has been go go go eve since she went in, trying to organised her house and put things in place like chair lifts etc.

So to say my Husband and I are exhausted is an understatement.

He’s been working as usual and then fitting time in after work for hospital visits, sorting the house out and then family time (when able).

So our healthy eating has been really off and on for a start, and spending any real time together has been a struggle.

However, our little boy had his Neurodevelopment appointment last Friday and we would at least have some time together then to go and see how the land lies with our boy.

For several months now I have noticed some strange behaviour from Matthew. Nothing extreme, but some things that are just not “normal” ( not that normal really exists).

🔹He is very limited with his speech. He can say dada until he’s blue in the face, and as much as he knows who daddy is and uses this to address Michael, he also chants it all day long. This is the only word he uses. He does gurgle and makes other noises too, but just not words.

🔹He doesn’t play in the conventional way that other children do. What I mean by this is he studies his toys. He feels them in his hands and moves them around so he can see every angle of the toy. He doesn’t use toys for the way they are intended. An example of this was displayed at his appointment on Saturday where he was shown a Rubber Duck, the Physio squeezed it and gave it to Matthew to see how he would react. Matthew studied the duck, touched the beak, twisted it around in his hand, looking at every angle of it and then put it in his mouth. This is the behaviour he displays when I give him anything to play with.

🔹He is overwhelmed by new people and places. By this I mean, if he finds himself in a room he doesn’t recognise, he can get very upset. Same goes for people he doesn’t know. In Toddlers for example, he doesn’t notice any of the children around him because he is so focused on the toys, but when he eventually realises he is surrounded by people, he gets very upset and shakes his body quite vigorously.

🔹 He is averse to loud noises/ singing/ shouting. This is quite variable though as it depends on the kind of mood he’s in, but about 75% of the time he will become very upset by cheering, for example; at the end of a song at Toddlers, or when Michael and I are making a fuss of him for being a good boy.

🔹 He is hypnotised by singing, music and lights. I have always sung to him (even as a tiny tot in his incubator) and he will 100% focus on my every word until I finish. Same goes for his 2 favourite songs, which the entire family as a whole have on a YouTube playlist just in case he needs soothing! He is also mesmerised by lights and will actually press his face against some of his toys that light up.

🔹 Until very recently he had a very strong aversion to baths and water in general. It was my sister who suggested distracting him with Peppa Pig while putting him in the bath and I can’t quite believe that after a year of being so strongly opposed to it, he got in and for the 1st time didn’t cry. He now bathes every night without a problem and without Peppa!

🔹 He has quite bad eczema so has lots of patches on his skin that are sore. However he will scratch them until they bleed and doesn’t really show any signs that it is painful. As well as this he will often go into little trances and he’ll punch himself in the head or tug on his ears, again without any real sign of pain or discomfort.

This isn’t the entire list of things but these are the main issues we’ve been having.

So… I have had a pretty good idea of what’s been going on for quite some time and have spoken about it at length with Michael and my family. However, Matthews consultant actually said the words on Friday and as much as I thought I was prepared, I wasn’t.

Matthew is showing strong and clear signs of Autism (non-verbal specifically at this time).

It hit me like a tonne of bricks!

Not because of the extra work and sacrifice it will take for Michael and I, but because he’s my baby and I just want the absolute best for him. I want him to have a wonderful and full life and it frightens me to think that he won’t have that, or that he will face hardships because of it. He has already endured so much and it’s unfair that he has to face any more difficulties.

Needless to say, we know we have the support of our entire family and Matthew is loved beyond measure. It will just be a trying few years until we figure out exactly how to manage things.

Also it is worth noting that Matthew is still very young and so things could change and become less prominent. However the hospital and NHS in general are trying to be more pro-active in diagnosing Autism at an earlier stage so that symptoms can be managed quicker and more effectively.

It will be a while before we receive our official diagnosis but they are already putting plans in place for early intervention purposes.

So… Matthew will attend another intense block of Physio/ Occupational therapy, as well as Speech & Language Therapy and he is being referred to a Toddler class for children with Special Needs.

We are so happy and thankful for the level of support Matthews medial team are showing. His consultant was wonderful on Friday. She was the first doctor to give Matthew a chance to come off his ventilator and although he didn’t manage on his first attempt it always meant the world to Michael and I that she had so much faith in him to try it. At the appointment on Friday she told me that she could see the sadness in my eyes but that I should remember everything that he has come through and that I have so much to be proud of.

I do.

My boy is a warrior. He is an amazing little human being and I love him more than I ever thought I was capable of loving another person. He is a beautiful, funny and clever little boy who loves Peppa Pig, Calvin Harris and his cuddle blanket.

There’s nothing I wouldn’t do for him and there’s nothing that will ever happen in our lives that will make me think he is anything less than what he is…

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My name is Danielle and I am a Wife, Photographer, ASD advocate & Preemie-Mummy to my beautiful little miracle Matthew. Follow along with me while I navigate the world of Toddlers and the Autism Spectrum.

This blog will be an open and honest representation of my life as a mummy as well as everything else in between.